U-M C.S. Mott Children's Hospital Congenital Heart Center Outcomes & Highlights Report

Congenital Heart Center OUTCOMES AND HIGHLIGHTS

EXTRAORDINARY HEART CARE FOR PATIENTS WITH PEDIATRIC AND CONGENITAL HEART DISEASE

FROM FETAL LIFE THROUGH ADULTHOOD As an international referral center, the University of Michigan Congenital Heart Center at C.S. Mott Children’s Hospital is one of the largest and best programs worldwide.

Why Choose Us EXTENSIVE EXPERIENCE We are a high-volume center, and one of the top three programs in the U.S. with the most experience caring for high complexity cases.

EXPERT TEAM, DEDICATED SERVICES • Expert specialists across every facet of heart care, spanning the most common disorders to groundbreaking therapies for complex cases • Dedicated inpatient and outpatient units including a 22-bed pediatric cardiac ICU and specialized teams providing 24/7 care EXCELLENT OUTCOMES • Outcomes exceeding national benchmarks, particularly for those with the most complex forms of congenital heart disease • Consistently ranked as a top 5 U.S. News & World Report program

COORDINATED CARE, CLOSE TO HOME • 13 clinic locations in Michigan and Ohio and collaborating partners across the country bring our expert clinicians close to you • Remote echocardiography and telemedicine capabilities • Comprehensive transport services when transfer is needed INNOVATIVE TREATMENTS AND CUTTING-EDGE RESEARCH • Leaders in research and innovation, providing patients with access to the latest treatments, devices, and clinical trials • Pediatric Heart Network Core Site • L arge fetal intervention program, pediatric VAD program, novel catheter-based device trials, unique airway program/custom 3-D printed splints FAMILY SUPPORT AND RESOURCES

COMPREHENSIVE LIFE-LONG CARE • Seamless care from fetal life through adulthood, focused on optimizing long-term outcomes and quality of life • On-site Von Voigtlander Women’s Hospital birthing center and topranked adult cardiovascular center • Longitudinal Follow-Up Program, Interstage Home Monitoring, Single Ventricle Multidisciplinary FollowUp Clinic, and Neurodevelopment Program

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Patient and family centered care program, on-site Ronald McDonald House, support for travel and lodging coordination, hospital school services, spiritual care, and many other resources

By the Numbers

ACROSS MICHIGAN AND AROUND THE GLOBE

41

WE HAVE CARED FOR PATIENTS FROM:

PEDIATRIC CARDIOLOGISTS

•

Every county in Michigan

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All 50 states

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60 countries

5

CONGENITAL CARDIAC SURGEONS

14

PEDIATRIC CARDIAC ANESTHESIOLOGISTS

20

ADVANCED PRACTICE NURSES

13

2008-2018 SURGICAL REFERRALS Map based on Longitude and Latitude. Details are shown for Path ID.

CLINIC LOCATIONS

13,772

CLINIC VISITS

814

SURGICAL VOLUME

14,217

ECHOCARDIOGRAMS 2008-2018 SURGICAL REFERRALS

2017 DATA

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Programs at a Glance The U-M Congenital Heart Center is located in the state-of-the-art C.S. Mott Children’s Hospital, a 348-bed free-standing facility.

Congenital Cardiac Surgery High volume international referral center, five congenital cardiac surgeons, two dedicated ORs, more than 800 cases annually Pediatric Cardiothoracic Intensive Care Unit 22-bed dedicated cardiac ICU with 24/7 in-house attending coverage by 11 pediatric cardiac intensivists Acute Cardiac Care Unit 32-bed telemetry unit, multidisciplinary patientcentered pediatric heart care Cardiac Anesthesia Service 14 pediatric cardiac anesthesiologists providing comprehensive anesthesia services Cardiac Nursing Specialized inpatient and outpatient teams, nursing Magnet designation Cardiac Catheterization Staffed by three pediatric interventional cardiologists with advanced training, performing approximately 700 cases annually spanning the full spectrum of congenital heart disease Hybrid Program Experienced team performing hybrid stage I for high-risk single ventricle patients and hybrid pulmonary artery interventions Heart Rhythm/Electrophysiology Program Staffed by three pediatric electrophysiologists with advanced training, providing the full spectrum of pediatric EP services, including more than 150 ablations annually Echocardiography Staffed by 13 pediatric cardiologists and 11 sonographers with advanced training and extensive skills in 2D, 3D, TEE, and fetal imaging, performing more than 14,000 studies annually

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Cardiac MRI Staffed by three pediatric cardiologists with advanced MRI training, more than 450 studies performed annually Prenatal/Fetal Heart Program & Fetal Intervention More than 1,000 fetal ultrasound studies annually, on-site birthing center, experienced fetal intervention team with one of the highest volume fetal intervention programs worldwide Heart Failure & Transplant Staffed by three pediatric heart failure/transplant specialists with advanced training, more than 400 outpatient visits annually and approximately 10 heart transplants per year, expertise in advanced heart failure, cardiomyopathy, and pediatric ventricular assist devices (VADs) Pulmonary Hypertension Inpatient and outpatient services staffed by dedicated team Exercise Physiology & Vascular Lab Performs the full complement of exercise protocols, vascular measurements, and testing Adult Congenital Heart Program ACHA-accredited program led by two ACHD board-certified cardiologists, more than 4,500 visits annually Neurodevelopmental Program Multidisciplinary team (cardiology, psychology, neurology, nursing, social work) providing unique inpatient consultation, outpatient evaluation of neurodevelopmental and behavioral concerns, and referral for appropriate treatments Interstage Home Monitoring Home monitoring services, care coordination, and education for single ventricle patients

Single Ventricle Multidisciplinary Follow-Up Clinic Multidisciplinary team (cardiology, gastroenterology, nephrology, neurology, psychology, etc) providing comprehensive, coordinated longitudinal care and education for single ventricle patients Cardiac Genetics Clinic Multidisciplinary team (cardiology, genetics, genetic counseling services) treating patients with heritable cardiac conditions Cardio-Oncology Clinic Specialized care for children with a history of cancer at risk for cardiomyopathy Muscular Dystrophy Clinic Multidisciplinary clinic (cardiology, neurology, physical medicine and rehabilitation) serving patients with a wide range of neuromuscular disorders Prevention Clinic Approximately 300 visits annually, specialized care for children with lipid abnormalities and hypertension

CARDIAC SURGERY

Consistently a top five U.S. News & World Report program

Our pediatric cardiac surgery program is considered one of the highest-volume programs in the nation by the Society of Thoracic Surgeons (STS).

2017 TOTAL CARDIAC SURGERY VOLUME

n U-M

n STS

Our annual surgical volume significantly exceeds the 250 cases/year benchmark that the STS uses to identify high-volume programs.

We are one of the top three programs in the nation performing the highest number of STAT Category 5 (highest complexity) cases.

2014–2017 STAT 5 CASES

140

Source: 2014–2017 STS Public Reporting Data, available at https://publicreporting.sts.org/chsd

OUTCOMES

Our outcomes exceed national benchmarks, particularly for those with the most complex forms of congenital heart disease.

VOLUMES

VOLUMES AND OUTCOMES

U-M’s pediatric cardiac surgery mortality rates are lower than national benchmarks particularly for the most complex cases.

OVERALL

2.7%

U-M MORTALITY

2.9%

STS MORTALITY

STAT CATEGORY 5

10.5% U-M MORTALITY

14.5% STS MORTALITY

U-M’s post-operative length of stay (LOS) is substantially shorter compared to national averages.

STAT CATEGORY 5

25 DAYS

POST-OPERATIVE LENGTH OF STAY BY STAT CATEGORY (2014–2017)

U-M LOS

46 DAYS STS LOS

n U-M

n STS

5

VOLUMES AND OUTCOMES CATHETERIZATION

ELECTROPHYSIOLOGY

687 CASES

282 CASES

OVERALL VOLUME

>20

HYBRID PROCEDURES

21

TRANSCATHETER PULMONARY VALVES (MELODY™ OR SAPIEN™)

>175

TOTAL PULMONARY VALVE IMPLANTS TO DATE

TOTAL VOLUME

0%

MAJOR COMPLICATIONS

49%

ABLATIONS WITH <1 MINUTE OF FLUOROSCOPY

96

%

SVT ABLATION SUCCESS RATE

99%

ABLATION PATIENTS ABLE TO RETURN HOME SAME DAY

TRANSPLANT

INTENSIVE CARE UNIT (ICU)

7

AS MANY AS

AS MANY AS

WITHOUT A CENTRAL-LINE ASSOCIATED BLOOD STREAM INFECTION (CLABSI)

WITHOUT A CATHETERASSOCIATED URINARY TRACT INFECTION (CAUTI)

TRANSPLANTS

3

VENTRICULAR ASSIST DEVICES (VADs)

84

TRANSPLANT PATIENTS CURRENTLY BEING FOLLOWED

>475 DAYS

ONE OF TOP

>570 DAYS

2 PROGRAMS

WITH SHORTEST ICU LENGTH OF STAY

Post-Operative Risk-Adjusted Mean ICU Length of Stay

18 days

100%

1-YEAR TRANSPLANT SURVIVAL

12 days

96%

3-YEAR TRANSPLANT SURVIVAL

8 days

0 days

n U-M

n OTHER SITES

SOURCE: Pediatric Cardiac Critical Care Consortium (PC4) TIME FRAME: Past 24 months, vs. other high volume sites

2017 DATA UNLESS OTHERWISE SPECIFIED

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Research and Innovation We support groundbreaking research and innovation geared toward driving improvements in care and outcomes, and developing new therapies for the next generation.

Regenerative medicine Our team is leading studies exploring new treatments for children with heart failure through the use of stem cells and tissue engineering, and participating in a cutting-edge trial of stem cell therapy in patients with congenital heart disease.

Precision medicine Through multiple lines of investigation, we aim to study and develop more individualized strategies for prevention, recognition, and treatment of adverse events tailored to the specific traits and needs of each heart patient.

Michigan Congenital Heart Outcomes Research and Discovery (M-CHORD) Program M-CHORD is our unique research core within the Congenital Heart Center supported by dedicated faculty and staff. Our comprehensive expertise spans the spectrum of investigation.

Connecting networks across the country to enable more discoveries, faster improvement

Improving outcomes across the lifespan We are one of the first programs in the country to systematically track long-term survival, morbidities, and quality of life for children undergoing heart surgery at our center, regardless of where they live or receive follow-up care. We have developed a novel “patient-reported outcomes” portal that will drive a better understanding of these critical outcomes and interventions to support optimal outcomes across the lifespan.

Pediatric Heart Network Core Site We are one of nine centers across the country selected to participate in the Pediatric Heart Network, funded by the National Institutes of Health. Through this network, our patients have access to clinical trials of cutting-edge therapies and interventions.

Novel devices and technology We lead the development and testing of novel devices tailored toward the pediatric heart population. Examples include:

We lead the Pediatric Cardiac Critical Care Consortium (PC4) and Cardiac Networks United, multi-center networks spanning in total more than two-thirds of the nation’s congenital heart programs.

These initiatives bring multiple data sources and expertise together to drive novel research otherwise not possible, and translate discovery to the bedside across hospitals to improve outcomes.

>150 >50 >120 ONGOING PROJECTS

ACTIVE GRANTS

ANNUAL PUBLICATIONS

Catheter-based therapies • 1 of 7 U.S. centers in Sapien™ COMPASSION Trial • 1 of 10 U.S. centers in the Melody™ post-approval study 3-D airway splints As reported in the New England Journal of Medicine, we have developed and implanted the first bioresorbable airway splints created using 3-D printing technology. These splints have been implanted in 19 patients to date to treat lifethreatening airway narrowing.

Donor heart preservation technology Our investigators are developing technology to perfuse donor hearts with the aim of improving organ availability and viability for heart transplant.

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EXPERT CARE, AROUND THE CORNER AND ACROSS THE GLOBE Nearly all Michigan families are within 90 miles of expert pediatric and congenital heart care from a C.S. Mott Children’s Hospital provider.

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Marquette

Coordinated Services for Families Traveling for Care • Experience providing seamless care for children around the country and across the globe with 25 percent of our congenital heart surgery patients traveling to U-M for expert care from out of state • Comprehensive transport services when transfer is needed • Remote echocardiography and telemedicine capabilities

Charlevoix ✦ Traverse City ■

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Petoskey ■ ✦

Alpena

Gaylord

Flint ■ Grand Rapids ■ ■ Grand Blanc Lansing ■ ■ Brighton ■ ■ Northville Kalamazoo ■ Jackson ■ Ypsilanti Hillsdale ✦ Ann Arbor ■ Toledo, OH n Clinics

✦ ECHO/EKG services

Patient and Family Support Services

Congenital Heart Center 1540 East Hospital Drive Ann Arbor, MI 48109-4204 Patients and Families 1-877-475-MOTT Referring Physicians 1-800-962-3555 www.mottchildren.org/congenital @MottChildren

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atient- and family-centered care P program

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On-site Ronald McDonald House

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ravel and lodging coordination T and support for families

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Hospital school and educational services

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Spiritual care

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Child life

Executive Officers of Michigan Medicine: Marschall S. Runge, M.D., Ph.D., executive vice president for medical affairs, dean, University of Michigan Medical School, CEO, Michigan Medicine; David A. Spahlinger, M.D., president, UMHS, and executive vice dean for clinical affairs, University of Michigan Medical School; Patricia D. Hurn, Ph.D., dean, School of Nursing.

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Social work

A Non-discriminatory, Affirmative Action Employer

Regents of the University of Michigan: Jordan B. Acker, Michael J. Behm, Mark J. Bernstein, Paul W. Brown, Shauna Ryder Diggs, Denise Ilitch, Ron Weiser, Katherine E. White, Mark S. Schlissel, ex officio.

©2019 Regents of the University of Michigan